National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1175
To the Senate Community Affairs Legislation Committee,
My name is . I am a parent of two children aged 10 and 12, who are currently NDIS participants, both with Autism level 2. I work full-time as a clinical business analyst for a not-for-profit organisation, with a background in counselling and secondary education.
My children have the same diagnosis, but very different presentations. My eldest child was accepted as an NDIS participant in August 2025. He has begun attending the local high school this year and has great ambitions to get a job and make money as soon as he possibly can. However, in the short time he’s been at high school, his emotional regulation and behaviour have resulted in multiple suspensions, despite our best attempts to coach him. When highly escalated at home, he becomes physically aggressive towards his brother or myself, his mother. He is now bigger than me, and while we are able to effectively de-escalate him the majority of the time, there are times when this isn’t successful and we have to implement crisis plans. He also has very low verbal comprehension and struggles to understand meaning. Imagine going to another country where you could speak about half the language - that is his daily experience. He works with an occupational therapist, a counsellor, a speech therapist, and we are in the process of securing a behaviour support practitioner for an assessment. He has so much potential and ambition to contribute to society as an adult, but I am afraid that he won’t be able to do this without support.
My youngest child is 10 years old, almost 11, and became an NDIS participant in April 2025. His anxiety in 2024 became so great that he could no longer attend mainstream school, and would melt down in distress and self-harm if we tried to take him. He has worked extremely hard to manage his anxiety and go out in public, and attend activities with friends. He struggles with interoception and needs prompting to go to the toilet when he is engaged in an activity, needs food proactively given to him as he can only rarely identify feeling hungry, and needs 1:1 support to engage with his distance education (otherwise he becomes overwhelmed and cannot complete tasks). His OT assessment showed that his emotional coping skills are around a 4 year old age; but his reading ability is at a 12 year old age. Often he will follow us around asking, “What can I do, what can I do” and if we can’t come up with a suitable suggestion, he will become dysregulated and say that he wants to kill himself. He is a sensitive person with amazing talents for connecting with animals, but I worry that without proper support he may not make it to his adulthood to achieve his goals.
Currently my husband works 48 hours a week as a firefighter (shift work), and I work 38 hours a week from home. Between us we juggle the case management of our children’s services, regulate them, reinforce the skills they need, and supervise our youngest son’s education. There have been many days where I have been working from home, and he has been having a meltdown and screaming while I had to be in a meeting online, promising him that I would help him afterwards - because we simply didn’t have any other supports for him, and I can’t afford to lose my job. We need to pay our mortgage. To help us, we have been using our paid leave, working overtime on nights and weekends to make up the hours we miss during the day, and occasionally bringing in my mum to help (who also works 3 days a week). We are stretched so thin, and every day I think about how we can find more money to pay for support, or supports that are a better fit for our situation. I field daily calls and emails from service providers around my work hours and caring for my kids. In addition, we constantly have to advocate with the education system to follow their
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1175
own policies and procedures for putting in place supports and having stakeholder meetings so my eldest son can participate in mainstream school.
I have grave concerns about the proposed changes to the NDIS, which I’ll outline below:
Parents are responsible for behavioural support
The bill proposes that supports should not be funded if their primary purpose is to reduce parental burden below what is reasonably expected. The risk here is that an assessor could say that my children’s behavioural support needs are “parental responsibility” - however, as we don’t yet have behaviour supports in place, we are holding a high level of risk that requires training to mitigate. Even as a counsellor I did not provide 24/7 mental health support and crisis intervention; however I am providing this support for my youngest son on a daily basis. We are also providing de-escalation support on a daily basis. Without this, the risk of someone requiring hospitalisation due to injury increases. Without funded behaviour support, my husband and I are the only thing standing between my son and a crisis that could result in serious injury or police involvement. This is not a parenting choice, but a clinical risk situation we are not resourced or trained to hold alone indefinitely. Lots of parents will be in this same boat without adequate behaviour support.
Other services can substitute for the NDIS
The existing education system is failing both of my children. The education department does not consistently follow its own policies and procedures. Teaching staff simply do not have the qualifications, expertise, or resourcing to manage a full classroom of children who have disabilities - and I say this as a former high school teacher of ten years. Their role is to teach to a curriculum. The risk, and the reality that my family is currently living, is that both systems point to each other to provide support, and our kids fall through the gap - save the determination of myself and my husband to ensure they get an education and receive support.
Other services such as the medical system don’t currently have provisions for long term engagement with children. Under the current Medicare system, my children would use up all available OT, speech and psychology sessions in around 20 weeks, but still need support the other 32 weeks of the year.
Given that other services would require significant and costly redesign to be suitable for NDIS participants, and differentiate between who can access certain services based on criteria of disability, it is more cost-effective to keep NDIS supports with the NDIS.
Functional capacity assessed without supports
I have concerns as a clinician about the validity of these proposed changes. Many participants will not be able to even participate in a functional capacity assessment without support, so no true baseline will be established when completing this. This would be the case for my children. Further, I have concerns as a clinician about unqualified people conducting assessments, which is a possibility under new rules. It is unethical and clinically unsound for someone who is not qualified to complete a clinical assessment and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1175
enforce or deny treatment/supports. This will open up the NDIA to enormous risk. It will also result in people receiving inappropriate or inadequate support, or being told that their disability is not “permanent”.
Ministerial powers to cut funding
Giving a minister the power to cut funding across categories without a process of structured consultation is in contravention to Australia’s obligations under Article 4(3) of the UN Convention on the Rights of Persons with Disabilities that requires that people with disability be actively involved in decisions that affect them. There must be a proper process in place for individual funding reviews, not sweeping cuts across categories.
Ultimately, if this bill passes as is, I am afraid that our children will lose NDIS supports, and as a family we will have no alternatives to rely on. I am also gravely concerned about the level of risk this bill poses to other NDIS participants.
Therefore I respectfully request the following:
• That the provision treating parents as default behavioural support providers be removed. Parents should never be holding clinical risk alone.
• That the Minister’s power to cut funding across plan categories without individual assessment be removed
• That the provision for other services to substitute for the NDIS be removed
• That functional capacity assessments be completed only by qualified allied health professionals using validated assessment instruments
• That autism be specifically recognised as a permanent disability, as aligned with clinical and legal definitions
• That behaviour, OT and speech supports are recognised as relating directly to the autism diagnosis due to their impact on an autistic person’s functional capacity
Thank you for taking the time to read my submission.
Kind regards,
, M.Couns